Carrying a Death Sentence :: My Terminal Pregnancy Story
Five years ago, I received devastating news. While sitting in a dark ultrasound room, my world was suddenly rocked. I would eventually become a statistic – one of the between 10 and 20 percent of women who experience a pregnancy loss.
In the summer of 2018, I was elated to learn I was pregnant with my second child. After a healthy and non-eventful first pregnancy, I had no reason to doubt this pregnancy wouldn’t have the same happy ending. My first trimester was normal and initial blood tests were good. Around 13 weeks, I went in for my NT ultrasound. This is often the first ultrasound that catches genetic abnormalities.
The ultrasound technician was quiet but I wasn’t panicked. I knew he was limited in what he could tell me and I could see an active baby kicking like crazy on the screen. But when the doctor came in a few minutes later, I could tell by the look on her face that it was not good news.
My baby had an extremely large amount of fluid behind his neck and down his spine. It was almost certainly a genetic abnormality. She could tell that there were likely issues with his heart as well.
It felt so strange to see a baby moving around so vigorously on the screen while being told he was dying. How much time he had left, they couldn’t say. So home I went.
Over the next few weeks, I saw multiple doctors and received an official diagnosis – my baby had Trisomy 21 and an extreme heart defect.
Here’s the irony in carrying a terminal pregnancy – to the outside world, you look like any normal pregnant woman. My belly grew bigger each week. I received congratulations from strangers on the subway. But I knew the truth – my baby had a ticking time bomb. I would likely never meet him alive. The best I could hope for was perhaps a few minutes if we even made it full term.
I’ve likened a terminal pregnancy to a death sentence. Each day you wake up wondering if today will be when your baby dies. I walked around in a haunted stupor, going through the motions at work and home while my heart was breaking.
On January 25, 2019 my son died. I delivered him two days later. We decided to name him Hoff, which is German for “hope” because while the grief felt ever consuming, my husband and I fought to keep hope that one day his death would be redeemed.
My faith carried me in the months to follow and I shared my story on podcasts and blogs in hopes that someone else who had been in my shoes would also find comfort in my story.
In January 2020, almost a day to when Hoff died, I welcomed a healthy baby boy into the world. My son Theodore’s cry was a balm to my soul and I am so grateful to have a rainbow baby.
October is Pregnancy and Infant Loss month and there’s a very good chance you know someone with a story like mine. Perhaps you have a story like mine. If so, my heart aches with you. Let’s take a moment this month to remember the babies we never got to meet. May our hearts one day heal.
